living with PANDAS, not the furry ones…

I’m so hopeful that I am on to something here! I’ve spoken with 3 specialists this week who all agree with me that A’s liver is a problem. 2 could feel her liver and one built a treatment plan around a liver that isn’t working that well. A few years ago I would have thought that all of these people were nuts, but not anymore. 1 treated the liver, 1 told me to use the methods I have to treat the liver, and the 3rd told me that the liver is associated with anger. I’ve been doing all the liver treatments I have for about the past week and guess what happened??? A got a fever!!!

I am beyond excited about this. A hasn’t had a fever since she was an infant. And actually I’m not sure if she has ever truly had a fever. I hear all these parents with children who have fevers of 104 and that is definitely not what is happening in our house. If you are reading this and wondering why I am excited about a fever, I will explain what I know. From what I have been told your body needs to be working properly to produce a fever. A fever is there to kill a germ in your body. If you have a weakened immune system you will not produce a fever. A had a fever last night and threw up. Throw up is not exciting but a fever is. She still has the fever today. It is low grade – 100 or less. But she is usually below 98.6.

If I want to spend time worrying I would notice that C has never actually had a fever either. But I am not going to dwell on that. Today we had the most lovely day. A stayed home and C had afternoon kindergarten. We played and watched shows. Then A and I had special time. We have never had that because the girls are so close in age. A may have had a fever but she wasn’t sick. We had a great afternoon crafting.

I know that some kids who are like A will spike a fever of 105 and that doesn’t;’t mean they are healthy. I hope that this little spike in temp has to do with a better functioning liver. I also wish I could explain this better to people who aren’t in our situation. Because like I said, 3 years ago this would have been nutso to me, but not anymore.

A has a history of bloody noses. They will come on and she will get 1-2/day for about 2-3 weeks and then they go away for several months. Lately, they have become extreme and she will pass clots of blood while they flow on and on for 20-30 min. We have talked about getting it cauterized, but our ped feels that the cauterization won’t hold in a case like A’s and we would have to do it repeatedly. For that reason, we have held off and tried every other remedy we can think of. We put a stronger version of neosporin in both nostrils each night while she sleeps. She has a humidifier and she takes Zinc daily. But there is no reprieve. We took her to the ENT on Monday fully expecting for him to cauterize her nose. Instead he gave us a pamphlet on what a bloody nose is and how to stop it. He said to come back in 3-4 weeks. 😦

Yesterday we got a call from A’s school that she had another bloody nose and we needed to come get her. J and I both took her to the hospital planning to cauterize her nose and put an end to this. We were in a room for about 4 hours. Something in visiting the hospital triggered an emotion in me and I feel like I went into shock. It wasn’t a panic attack but something definitely happened to me. It had absolutely nothing to do with our reason for being there. I could have taken A in for a paper cut and still felt the same way. The layout of the ER was almost identical to the ICU A was in when she has her Plasmaphoresis. There were all the regular beeps and alarms going off and it was way more than I could handle. J tried to remind me that this wasn’t about me but I simply couldn’t shake it. Pretty instantly I got a migraine. I was happy to return A to school because I clearly was not ok. I went for a really long walk, tried meditaing and finally went to bed for the night. But it’s still with me today.

We haven’t been in the hospital overnight for about 2 years. But there is still a trigger inside me that evokes extreme fear and anxiety. I was and am really shocked that I reacted the way I did.

Today was an early release day for both girls. For some reason, we didn’t have any therapies and all of our sports are over. I feel so productive today. Each day I beat myself up that I can’t get the house in order and can never get anywhere close to caught up on where I’m supposed to be regarding all of my household responsibilities.

We had a playdate for both girls and they all played quite nicely together. I was able to keep an eye on everyone and get caught up on the laundry. What an amazing feeling. I started thinking that the hours in the car each week for all the therapies may actually be having an impact on why I can never get anything done. Like actually finalized and crossed off the list.

Right now my sweet girls are watching a show. But already today they have had a fabulous playdate (which is an accomplishment because many times playdates don’t go so well), done several chores, completed their homework and are just sitting happily together. There will even be time for a bath tonight!!

This post makes me feel like a mom blogger. One who has children that behave, have sparkling houses and fit in exercise. Tomorrow will be another day, but today sure feels great!!!! This is not to say that A is in tip top shape. More for me to realize how much peace it brings to have things in order at home. If only I could find an Alice from the Brady Bunch to come in each day and just catch us up on what needs to be done while I am at therapies!!!